The Countdown. Day 2.

The higher doses of medication did not work. So still I am in pain with no obvious reason why. Tomorrow I will finally call the doctor and hope for a quick appointment for the next round of testing and experimenting with medications. Yet somehow I am finally calm. At peace if you will. I guess laying awake for six hours mentally making a plan for each known diagnoses you can finally start to accept whatever may come. I know nothing ever stays the same for long, not for me or anyone else.

The only thing that worries me now is the response of those around me. Few people know how to react to illness. They either make a huge deal out of it or try and ignore it; neither or which works. The only way to make the one sick not feel like an out cast or less human is to acknowledge it. Discuss it and find a way to incorporate a new routine that works for everyone involved. From doing something extra to help out when someone is in pain or fatigued to just listening when they need an ear to vent, bitch, or cry with. Some people are blessed to never know chronic sickness and for that I am thankful. But there is always empathy to be had for those we do not understand. I can empathize with how hard it is for them to deal and accept something so utterly out of their control like another persons health. Hopefully with the coming months as this chapter of my life unfolds the people I am around will empathize more and more with my situation.

So here I am, another night of insomnia due to this pain. It is now 6:44am. Which I guess means this is technically Monday but as I haven't slept I am calling it Sunday in this post at least. I will lay down again and try and rest some before finally getting to make the anticipated phone call.

The Countdown. Days 5, 4, and 3.

The waiting mostly continues. Only a small bit of information has been found and it isn't really good news. My second kidney test was worse than the first one which is not a good sign of things to come. The worst thing however has been the exhaustion. Mentally from the stress of not knowing still and physically from my health declining. Napping did not help and neither did forcing myself to get up and move and be productive; it was just constant exhaustion. The people I have been around have been truly helpful in their own ways so I am somehow holding on to the little strength I have left. It is hard though at times to realize how limited I am in comparison to others. Doing basic things are being harder and harder. Even my concentration level is slipping and things such as writing are getting more difficult. I have never been one for physical labor so not being able to carry things or move as quickly as others doesn't bother me so much. The mind is what I hate feeling out of control of. I love writing, not just typing things on a computer, but sitting in a nice spot with a pen and paper. Letting the words flow with no true purpose other than to just be. I can't seem to do that now. I try and the words will not come. Even as good as this blog is and talking with people about the stress nothing compares to that release of just letting go. Hopefully in the coming days as I learn at least a little bit more of my fate I will be able to start it again.


(Three days were written with my phone and had issues uploading. I edited them into one post just to make it easier on me.)

The Countdown. Day 6

I am a little late on this post. Spent day six of this trying to keep my mind occupied. Which, while mostly successful, it is impossible to do completely. Every time a muscle would tense, a joint ache, or I was heading to the bathroom yet again I had to wonder how bad everything going on in my body is. Will it get worse? Will I ever feel "normal"? The uncertainty is a million times more draining than the pain and discomfort I physically feel. Five more days till I learn anything new. I don't think it would be as bad if I didn't know the possible diagnoses. But I do. And I have researched them every spare second I have had. I have even stopped playing my game (which for anyone who knows me personally should explain how preoccupied this all has me) simply to try and learn more. I am scared, I never planned to be in this position again but yet, here I am. Waiting on more tests to find a diagnosis to find an appropriate course of action. But through all this I am still the one who feels the aches, pains, and knows my body better than a lab...and I for once have no doubts as to what is to come.

The Countdown. Day 7.

I want to start by saying thank you to those who have read any of my posts and either prayed or sent good thoughts my way (whichever you are into of course). You may never understand how much healing comes from this simply act of writing.

The last two weeks have been filled with so much uncertainty. Symptoms I have never experienced on top of the same ones I have dealt with for fifteen years. Something new and wrong is going on inside my body. I held out seeing my doctor for a while. To be honest as bad as the pain was I was more scared of going to my doctor than dealing with it. Every time I have gone it has been life altering news. I am starting to like my life and had finally adjusted to the other health issues. A new illness, if the past is any indicator, is followed by huge changes. From the death of my only daughter to being forced to drop out of college. I am not scared of another illness, I already know the likely diagnosis, treatment options, prognosis, etc. Yet I do not know what will accompany it. I have a week of my regular medications raised as a last attempt to rule out any minor causes for the symptoms before I receive the official diagnosis. I am not certain of what will come from it but I think this go around, as terrified as I am, I finally have a little bit of hope. My dearest friends and fellow angel mommies have been wonderful in dealing with my little mini meltdowns and they have brought me back up to where I need to be mentally. Times are still hard, I am still terrified, but with their help I found some sort of peace. I know my life is about to change in some way, big or small, but I have a wonderful group of people surrounding me during it.

So here comes the countdown till next Monday.

Four years, five months, two days.

I am sitting here this morning in a daze. Exhaustion mixed with this restlessness. Above my computer hangs three small little angels. One for each year old my daughter would be had she lived. This coming month is when she would be turning four. I can do nothing tonight but wonder what she would be like. Would she be a little princess playing with dolls or a tom boy playing with mud? Would she look like her daddy with piercing blue eyes or have my round brown stare? She would be old enough to go into preschool and be away from me. But she has already spent four years, five months, two days away from me. I sit here staring at these small angels and know I need to begin my search for a fourth. Every time I come close to losing it. The grief is physically painful. I want to be waking her up and getting her ready for day instead of trying to find a memorial for her.

Stress in Groups, Peace Alone

I used to love being around people. The music and the huge crowds in clubs, bars, and concerts was exhilarating to me. I had fun spending a few hours pampering myself before hand (nails, hair, makeup done so carefully that each bit was flawless). I lost that somehow. "Social Anxiety Disorder" is what professionals call it. I am terrified of and mostly avoid social situations. I can still have fun with people I know and I am comfortable with, which are now just a few. Not many friends have stuck around through the last diagnosis and the subsequent treatments. I mean when you are in your late teens early twenty you want to be out, not sitting in someones home while they recuperate from a chemo treatment. The friends I have now did not even come into my life until after that.

Now as I start to try and rediscover life after several years of hell I am struck by how simply interactions can turn into terrifying encounters. Walking through a hallway of a crowed bar has turned from just that into this maze of how to avoid the people there because I do not know them. I do not know what they are capable of. I don't know if it just that I am out of practice in being around people or if it is the PTSD rearing its ugly head making me question the motives of everyone around me. Even the people I know I find it difficult to trust on more than just a surface level, I know they would let nothing happen to me but all the while I can not allow a deeper trust to build.

Although I have to say that I am grateful for them, even if I can never seem to truly trust them. They have handled situations with my anxiety so well. From taking me home during a panic attack to simply coming up and hugging me tight enough that I can for a moment just bury my head and focus my breathing to calm down. I know they can never truly understand the fear that I have being out and
I love them for trying reaching out instead of distancing themselves from me.

But even with their support and with them making me smile after I am out of the anxiety inducing situation I can not explain the relief of being home, in my room, sitting in my tiny little chair. Normally I have to have a show playing in the background to distract me for them thoughts before sleep that often lead to the night flashbacks and panics...but tonight I am finally so calm just being alone that I doubt that will be an issue tonight. My mind is finally finding a place of peace, at least for this night. So for me, who lives on day at a time, it is enough.

The Great Sleep Dilemma

Today has just been one of those days. With all the pain and anxiety I have daily sleep is a rare commodity. Even going to bed early last night and "sleeping" through the night did not give any rest. I just seemed to hang on the edge of actual sleep, like it was a cliff that I was to scared to jump off. Seven straight hours of that then over twelve hours spent awake as I progressively enter a more zombified state.

Why is my subconscious so opposed to rest? With the PTSD I have horrible nightmares. Well not even nightmares because nightmares are like dreams, they exist only in the mind. The flashbacks when sleeping are rarely worse than those when I am awake and neither can be predicted with any accuracy. So why is sleep the thing that I just can't seem to find.

My pain level on a daily basis is higher than most peoples when they are even injured, yet I have felt this way for more than two thirds of my life. Given that same amount of time is when sleep has been increasingly more difficult. Yet even with the use of heavy narcotics, always prescribed, I have issues getting past the threshold into deep sleep.

Now it is not even eight at night and I am getting more fatigued by the second instead of the minute. Not even sure why I am taking the time to write this post. As I do though I have been wondering more and more of why this happens. Each tiny part of my life gives an explanation for why I just can not find sleep all the while there is evidence that the parts are not the only cause.

I have PTSD and flashbacks which cause panic, I have anxiety knowing that it might occur, I have severe daily pain but medications that alleviate it have not helped, and this has all been ongoing for fifteen years. Over the counter sleep aids have not worked and prescription medications have caused me to have rather disturbing hallucinations. Even during the more productive periods of therapy my sleep hasn't changed.

Thinking back I remember a brief respite though when I was writing poetry nearly every day, but the words for that seem to have swept up in the whirlwind of everything else. But even then my sleep was still far from what a doctor would consider normal. Instead of staying awake for three days before my system essentially crashed I would stay up for only two.

So what is my point of this, my resolve for the situation? I have no idea. I am truly lost in this. All I can do is keep living day by day. Study when I have the strength, try and find joy in small things, and write whatever I can to see if maybe I can get that little spark back that was the only help to me years ago. Who knows, maybe I will find it and begin to post some poetry as it comes.